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NEWS & UPDATES

DEMANDING BETTER:
An HIV Federal Policy Agenda by
People Living with HIV

40 years into the HIV epidemic, networks of people living with HIV demand a response that uplifts dignity, human rights, and wellness

 

The policy agenda, written collaboratively by member networks of the U.S. People Living with HIV Caucus, details concrete recommendations for the executive branch and Congress to address shortcomings in the National HIV Strategic Plan and the federal Ending the Epidemic initiative

 

Contact: Ronald Johnson, Chair, U.S. People Living with HIV Caucus, RJohn0403@aol.com

Mark Misrok, Executive Director, National Working Positive Coalition, markmisrok@workingpositive.org

 

July 13, 2021: Forty years into the HIV epidemic and eleven years after the Obama administration released the first national plan to respond to and combat HIV and AIDS, much progress has been made—but the U.S. has a long way to go. The domestic HIV epidemic in the twenty-first century is driven by persistent racial and gender inequities that hinder efforts at prevention, diagnosis, treatment, and care; as a result, Black, Latinx, Indigenous, and other communities of color face both disproportionate rates of HIV and worse health outcomes once diagnosed. Although biomedical tools exist that could end the HIV epidemic, stigma, discrimination, and ongoing human rights violations continue to impede access to healthcare, which is key to ending the epidemic. The only way to address the domestic HIV epidemic once and for all is to formally engage leadership from people living with HIV and to move beyond a biomedical approach to humanize the HIV response.

 

Demanding Better: An HIV Federal Policy Agenda by People Living with HIV lays out a clear roadmap for  the administration, Congress, and federal agencies to achieve their goal of ending the HIV epidemic by 2030 with a focus on improving quality of life for people already living with HIV. Authored by the U.S. People Living with HIV Caucus, a “network of networks” of people living with HIV, including representatives from the Global Network of People Living with AIDS - North America, International Community of Women with HIV/AIDS - North America, National Working Positive Coalition, Positively Trans, Positive Women’s Network - USA, the Reunion Project, SERO Project, and THRIVE SS, Demanding Better presents a pathway forward. The networks collectively represent tens of thousands of people living with HIV, who have informed the agenda.

 

“There are more than a million people living with HIV in the United States today. If we have learned anything over the past 40 years, it’s that ending the HIV epidemic is not even possible without actively partnering with people living with HIV. We need and deserve a response that honors the rights of all people living with HIV to health, wellness, dignity, and safety,” said Ronald Johnson, chair of the U.S. People Living with HIV Caucus, and a former member of the President’s Advisory Council on HIV/AIDS (PACHA).

 

Demanding Better: An HIV Federal Policy Agenda by People Living with HIV centers around five broad issue areas: i) structural integration of communities most impacted by the domestic epidemic into the HIV response; ii) creating an affirming human rights environment for people living with HIV; iii) addressing racial and gender inequities; iv) attending to sex workers and immigrants within the response and v) affirmatively committing to improve quality of life and care for people living with HIV. Demanding Better offers concrete recommendations for administration officials to strengthen the HIV National Strategic Plan, federal Ending the HIV Epidemic initiative, and the overall domestic response to the epidemic. Specific recommendations include addressing HIV-related stigma; robustly funding and staffing the Office of National AIDS Policy; rechartering federal HIV advisory bodies to add designated seats for representatives of networks of people living with HIV; including employment services for people living with HIV in the Ryan White HIV/AIDS Program; declaring a moratorium on molecular HIV surveillance; adding sex workers and immigrants as priority populations within the HIV response; creating a minimum standard of care for people living with HIV; and addressing sexual and reproductive health and rights for people living with HIV.

 

The policy agenda is not solely focused on the executive branch, however, and includes recommendations for Congress to meaningfully improve the lives of people living with HIV. These recommendations range from legislation that has already been introduced, such as the SAFE Sex Worker Study, HEAL for Immigrant Families, and American Dream and Promise Acts, to new legislation and changes to existing policies. As with the administrative policies, these recommendations cover a range of issues that impact every aspect of the lives of people living with HIV, from housing to food and economic security.

 

Demanding Better serves as the most comprehensive federal policy vision for people living with HIV to date and should be looked to as a roadmap for all stakeholders concerned about the domestic HIV epidemic.

 

To hear more about the agenda, join this week’s Center for American Progress virtual event: Beyond Medication: Humanizing the National HIV Response, Wed. 7/15 at 2pm EDT/11am PDT. Hear from people living with HIV and Harold Phillips, director of the White House Office of National AIDS Policy (ONAP), about what's next in the federal response to HIV.

 

For more info, and to RSVP, go to: https://www.americanprogress.org/beyond-medication 

TODAY WE ARE

A collective Poem from the National Convening on HIV & Employment 2021

67 extraordinary individuals came together during this intense and complex week for two afternoons to fire up a national HIV and employment advocacy movement, in the first-ever National Convening on HIV & Employment, a project of the National Working Positive Coalition, co-sponsored by the U.S. People Living with HIV Caucus, and the Pennsylvania State University, made possible through the generous support of ViiV Healthcare.

 

One clear message that emerged from the Convening, within a context of ongoing injustice and the COVID-19 pandemic, is that we are committed to collectively build critically needed responses to the employment needs of people living with or placed at greater vulnerability to HIV.

 

Below, and attached (listing contributing authors), is the collective poem inspired by the Minds and Hearts articulated by the powerhouse group of participants in this week's National Convening on HIV & Employment. TODAY WE ARE was created by the amazing poet/artivist Jackie Loweree, from the responses in Zoom chat to the culminating call for expression of heart and mind reflections from facilitator extraordinaire Julie Simpson.

Today We Are

 

Today we are unleashed and intentional because it is 

hard not to feel weary, motivated by fury that 

no man should beg for pay. 

Value should lie in the life you live, capital in the love you give. 

Unto all we wish gain, and not the servitude of pain; 

It’s time to take our space and make ourselves VISIBLE!

 

Today we are inspired by our power to change create. 

The well of wisdom in the community is bottomless. 

Gratitude for the wisdom, 

gratitude for these moments, 

for when they come again,

new challenges will have befallen us 

but we will know, because we are wise, 

that all intractable problems can be cracked.

 

Today we are aiming to go far, together, 

relishing in our inclusivity, equality, our diversity, 

breathing the collective impact from our shared love, 

because brilliance has no one face, as such 

we are moving together, talking together, uplifting together.

 

We all need each other. 

 

Today we are inspired by what already exists 

Hope prevails! 

Because there is hope when people care. 

And these are our people, 

and as long as we show up, we are never truly alone. 

The brilliance is in our people; 

it always has been; it always will be. 

 

Today we are doing, not trying. 

Community. Connection. Love.

As we conceive them, we will achieve them. 

And when we get there, 

we will have these people to thank. 

So, let everyone at the table rejoice 

chanting: love and liberation to all of us! 

COMMENTS FOR THE PRESIDENTIAL ADVISORY COUNCIL ON HIV/AIDS

Mark Misrok, Executive Director, National Working Positive Coalition

March 9, 2021

I’m Mark Misrok, a person living and aging with HIV and Executive Director for the National Working Positive Coalition. Our work is focused, in alignment with HIV care and prevention, to strengthen responses to the employment needs of people living with or at greater vulnerability to HIV.


  • Our current HIV services infrastructure is weakened by a profound lack of capacity to respond to the employment needs of people living with or at greater vulnerability to HIV across most of the country. Few of the individuals we serve have the opportunity to understand what employment options may be possible for them to achieve optimal physical, mental, and economic health and well-being, maintaining or improving their access to health care, medications, housing and/or economic security. Few HIV care and prevention providers are equipped with this knowledge to accurately share it with those that they serve. For decades now, many thousands of us, people living with HIV in the U.S., have advanced through our working years into impoverished older age without, or with only the most minimal and marginal, participation in employment and vocational development. The urgency of our response to employment needs has only been heightened by the impacts of the COVID-19 pandemic.


  • The exclusion of employment services as an allowable supportive service in the Ryan White HIV/AIDS Program helps institutionalize minimal attention, and limited to no response to the employment needs of people living with HIV by the providers to whom we are most well-connected to and trust, those who otherwise best understand and care about us. Little to no training is offered through the AETCs on how to understand and respond to employment needs, either directly, or through informed linkage and referral, and the few HIV-focused employment programs developed by HIV service providers with other sources of funding, too frequently struggle or collapse, regardless of their success. It would seem that we don’t value economic and employment opportunity for the communities we serve, we don’t see connections between addressing employment needs to racial justice and to health equity, or we believe that there are no models for how employment needs can be addressed within our own service delivery infrastructure.


  • Employment services help to level the playing field for job seekers who do not and have not had equal opportunities. People living with or at greater vulnerability to HIV deserve and need non-stigmatizing, non-discriminatory, affirming, health-promoting employment services, located in the programs where we access care and prevention services, to address social determinants of health and for a more just quality of life and well-being. Thank you.

COMMENTS FOR THE PRESIDENTIAL ADVISORY COUNCIL ON HIV/AIDS

Mark Misrok, Executive Director, National Working Positive Coalition

March 9, 2021

I’m Mark Misrok, a person living and aging with HIV and Executive Director for the National Working Positive Coalition. Our work is focused, in alignment with HIV care and prevention, to strengthen responses to the employment needs of people living with or at greater vulnerability to HIV.


  • Our current HIV services infrastructure is weakened by a profound lack of capacity to respond to the employment needs of people living with or at greater vulnerability to HIV across most of the country. Few of the individuals we serve have the opportunity to understand what employment options may be possible for them to achieve optimal physical, mental, and economic health and well-being, maintaining or improving their access to health care, medications, housing and/or economic security. Few HIV care and prevention providers are equipped with this knowledge to accurately share it with those that they serve. For decades now, many thousands of us, people living with HIV in the U.S., have advanced through our working years into impoverished older age without, or with only the most minimal and marginal, participation in employment and vocational development. The urgency of our response to employment needs has only been heightened by the impacts of the COVID-19 pandemic.


  • The exclusion of employment services as an allowable supportive service in the Ryan White HIV/AIDS Program helps institutionalize minimal attention, and limited to no response to the employment needs of people living with HIV by the providers to whom we are most well-connected to and trust, those who otherwise best understand and care about us. Little to no training is offered through the AETCs on how to understand and respond to employment needs, either directly, or through informed linkage and referral, and the few HIV-focused employment programs developed by HIV service providers with other sources of funding, too frequently struggle or collapse, regardless of their success. It would seem that we don’t value economic and employment opportunity for the communities we serve, we don’t see connections between addressing employment needs to racial justice and to health equity, or we believe that there are no models for how employment needs can be addressed within our own service delivery infrastructure.


  • Employment services help to level the playing field for job seekers who do not and have not had equal opportunities. People living with or at greater vulnerability to HIV deserve and need non-stigmatizing, non-discriminatory, affirming, health-promoting employment services, located in the programs where we access care and prevention services, to address social determinants of health and for a more just quality of life and well-being. Thank you.

VANESSA JOHNSON'S RIBBON STATEMENT

Valuing the Meaningful Engagement of Subject Matter Experts with Lived and Earned Experiences - March 8-9, 2021 PACHA Meeting

My name is Vanessa Johnson, and I serve as a co-Executive Director for Ribbon. Ribbon is a minority, women-led entrepreneurial nonprofit organization located in Largo, Maryland.

The statement I am about to read, Valuing the Meaningful Engagement of Subject Matter Experts with Lived and Earned Experiences, is a small but meaningful action that the federal government can take to implement the HIV National Strategic Plan.

After nearly 40 years of the HIV epidemic, governments and organizations at all levels are still asking people living with HIV to come to the table to help them shape funded programs and services on a volunteer basis or for nominal compensation. Now, people living with HIV are once again being asked to “meaningfully engage” in support of the nation’s plan to end HIV.

In this context, Ribbon wants to discuss the undervaluing of women living with HIV (WLWH) who provide subject matter expertise. As subject matter experts, this group should be afforded the same consideration as other expert professionals in the form of fair compensation.

Organizations seeking the input of WLWH should fairly compensate us for the lived and earned experiences, knowledge, and expertise that we bring to the table. Many women are heads of household and are responsible for covering expenses that enable them to care for themselves and their loved ones. Thus, women must receive compensation at a rate higher than a thank you, gift card, or stipend. At the very least, governmental entities and organizations must compensate women at a rate that truly reflects their value and ability so we can continue to do this type of work.

Unfortunately, grant-funded programs requiring women's engagement often do not include us as contractors or consultants in their budgets. Instead, we are relegated to the budget lines for stipends, gift cards, or refreshments. These budgets must reflect the time, effort, and value of ALL resources needed to create successful programs.

The federal government, beginning with itself, must require other governmental entities and organizations to compensate women for their time and effort fairly. This recommendation can be viewed as one small step towards addressing the income inequities that make it difficult for the community of WLWH to thrive beyond the goal of viral suppression.

In closing, Ribbon would be glad to assist you in developing fair compensation policies and program guidelines that serve a variety of women you seek to engage.


Thank you.


In addition to working at Ribbon, Vanessa is also on the Board of Directors for the National Working Positive Coalition (NWPC).

NEW YORK STATE RESOURCE LIST

NWPC has developed a key resource list for New York State as a companion to our Employment Needs Survey of People Living with HIV in New York State: Employment, Emotional Support, and Mental Health: Resources for Assistance and Information in New York State


Residents of New York State living with HIV who are interested in participating in the Employment Needs Survey can contact: ResearchNWPC@gmail.com

Positively Aging and Work presentation

The National Working Positive Coalition is proud to partner with The Reunion Project (TRP) and Test Positive Aware Network (TPAN) on their Positively Aging initiative, through a grant from Gilead. This initiative provided the opportunity for NWPC to present on employment topics in the NOLA Regional Virtual Town Hall on July 21, 2020. As COVID-19 required changing the planned two-day in-person convening in New Orleans into a virtual 2-hour online event, it allowed for including a regional focus including Alabama, Mississippi, Louisiana and Texas. Vanessa Johnson and Mark Misrok provided this videotaped session, followed by a live breakout group discussion, and the development and sharing of this Regional Employment Services and Resources Key Listings Guide.

NEWS & UPDATES

The Well Project's Fact Sheet; "Moving Forward, Living with HIV: Considering Education or Training"

https://www.thewellproject.org/hiv-information/moving-forward-living-hiv-considering-education-or-training


Positively Aware: "Positively Aging: Bringing Work Back to Life"

https://www.positivelyaware.com/articles/positively-aging-bringing-work-back-life


POZ Magazine: "Employment Needs"

https://www.poz.com/article/employment-needs-mark-misrok


New York State Ending the Epidemic: Expanding Employment Opportunities for People Living with HIV - Steering Committee Report and Implementation Strategies

https://www.health.ny.gov/diseases/aids/ending_the_epidemic/docs/expanding_employment_opportunities_steering_committee_implementation_strategies.pdf

Amida Care: "Hire Me!: End AIDS with Jobs"

https://www.amidacareny.org/assets/Workforce-ENG.pdf